Well, I've done a very bad job of keeping up with Kreed's blog. I am going to try and change that and make Kreed's blog central station. Just a few months ago I created Kreed's World and all it's various social media, never knowing it would become a thing. A lot has happened in Kreed's World in the last few months as well. I started all of this also when he was nearing the end of a medical journey. Which basically took a kid from looking like this:
To looking like this:
What an incredibly journey. I write about it more in past posts where we first figured out it was no just behavioral, that maybe it was seizures. Then we saw it wasn't just seizures and we thought maybe it was low blood sugar. We were correct on his plunging blood sugar levels but not the reason. Here were a few of his levels:
First everyone thought seizures. Then we went to his genetic doctor (for his various issues plus metabolic disorder) and Endocronologist (due to his hypothyroidism) to try and find answers. Both were intrigued and wanted to run a bunch of tests. Basically looking for a shot in the dark. His Endo came up with the winning goal. His cortisol level was wicked low. No where near where it should have been. Alas we had an answer- cortisol does a lot for your body including keeping blood sugar fine, as well as helping your body manage stress. So for who knows how long Kreed was not able to deal with stressors like you and I and he had plunging blood sugars. The whole thing breaks my heart. Anyhow...he is diagnosed with an ACTH Deficiency, which basically means his body does not make cortisol correctly or in enough amounts. Very similar to Addison's Disease. The cause is not sure as of yet. There also still may be both underlying mitochondrial issues and nerve damage. We are still searching for all the answers.
All we know is that once Kreed started cortisol replacement with hydrocortisol...he was a different kid. Back to being happy. Back to learning. Back to communicating. And his communication is where I will go next.
Kreed first got the new Dynavox Compass app and within the first week he was already saying more than he had in the past. With his previous Dynavox Maestro and his other devices (PRC and others, you name it, we've tried it), the most he really ever did was request what he wanted- which left out pretty much responding to questions, making comments, asking questions and helping breakdown's in communication. The very first night we showed him the new app he giggled like a little school girl. I'm not kidding. I even have it on film. It was amazing. The Dynavox Compass software has more vocabulary and language than all the other devices combined. I'm not kidding either. Devices is also my life's work and I'm saying this. It easily takes Kreed from just requesting to commenting. I've never seen anything like it. Plus, it has all the behavioral supports built in such as schedules, timers, first/then charts and all kinds of stuff that's for another post. Kreed knew it too!
Now we've seen him comment on songs and movies he's watching. He is much more specific in asking for what he wants. But probably the most profound aspect of the new device- which he was able to get a Dynavox T10 which is their tablet stand alone device with Compass- was his ability to now cope with us telling him no or wait. Prior to his device, I would get boxing gloves ready and pretty much get ready for a fight anytime I would have to tell Kreed no. I'm not joking either- I have pictures and movies to prove it!
Now when I tell him no- he negotiates with me. He will first ask me in every way possible for what he wants and let me tell you, he can get very creative ha. Then after that I always remind him and ask him "what was my answer" and he goes and hits no. Then we will negotiate for a bit- he will ask for something and I will tell him something until we have a mutually agreed upon activity. Do you know how profound this is?? I don't think peopl realize. I could never tell him no before without a major production. Now he has a huge amount of language and actually goes back and forth with me like a regular teenager. I wish I could shout this from the rooftops because it's amazing to me.
So many things have been amazing to me, from him telling me what his favorite song is, to what he wants to eat, to how he feels at a given moment to accepting no for an answer. For some reason the software is very easy to navigate and Kreed does not have to build every single part of his sentence so very quickly he can speak to me, as if he was using his voice. So instead of saying "I want you to bake cookies" Kreed will say "cookies, you bake it." Not as grammatically correct but Kreed likes to use nouns first and then qualify it. Just like with songs he will say "Part of your world, that's my favorite." do you know how many key strokes that took? TWO. Before it would have been word for word- 7- or at least 3 (assuming one key was the whole song and the other two might have been my and favorite). I will have to make more videos showing this.
Kreed is now using his device in every aspect of his life. It's amazing. And more amazing things I think will come. For now it's late ha and I need to go talk to him about bedtime. Yes, I can actually talk to Kreed about bed time now. In the one month since he started the hydrocortisone he is now having mini conversations with us. I'm still amazed by this. I leave you with my favorite picture right now. It always brings me to tears and I can't explain why. But it's simply beautiful to me. As is he.
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